The reporting of neuropsychiatric symptoms in electronic health records of individuals with Alzheimer’s disease: a natural language processing study

Background Neuropsychiatric symptoms (NPS) are prevalent in the early clinical stages of Alzheimer’s disease (AD) according to proxy-based instruments. Little is known about which NPS clinicians report and whether their judgment aligns with proxy-based instruments. We used natural language processing (NLP) to classify NPS in electronic health records (EHRs) to estimate the reporting of NPS in symptomatic AD at the memory clinic according to clinicians. Next, we compared NPS as reported in EHRs and NPS reported by caregivers on the Neuropsychiatric Inventory (NPI). Methods Two academic memory clinic cohorts were used: the Amsterdam UMC (n = 3001) and the Erasmus MC (n = 646). Patients included in these cohorts had MCI, AD dementia, or mixed AD/VaD dementia. Ten trained clinicians annotated 13 types of NPS in a randomly selected training set of n = 500 EHRs from the Amsterdam UMC cohort and in a test set of n = 250 EHRs from the Erasmus MC cohort. For each NPS, a generalized linear classifier was trained and internally and externally validated. Prevalence estimates of NPS were adjusted for the imperfect sensitivity and specificity of each classifier. Intra-individual comparison of the NPS classified in EHRs and NPS reported on the NPI were conducted in a subsample (59%). Results Internal validation performance of the classifiers was excellent (AUC range: 0.81–0.91), but external validation performance decreased (AUC range: 0.51–0.93). NPS were prevalent in EHRs from the Amsterdam UMC, especially apathy (adjusted prevalence = 69.4%), anxiety (adjusted prevalence = 53.7%), aberrant motor behavior (adjusted prevalence = 47.5%), irritability (adjusted prevalence = 42.6%), and depression (adjusted prevalence = 38.5%). The ranking of NPS was similar for EHRs from the Erasmus MC, although not all classifiers obtained valid prevalence estimates due to low specificity. In both cohorts, there was minimal agreement between NPS classified in the EHRs and NPS reported on the NPI (all kappa coefficients < 0.28), with substantially more reports of NPS in EHRs than on NPI assessments. Conclusions NLP classifiers performed well in detecting a wide range of NPS in EHRs of patients with symptomatic AD visiting the memory clinic and showed that clinicians frequently reported NPS in these EHRs. Clinicians generally reported more NPS in EHRs than caregivers reported on the NPI. Supplementary Information The online version contains supplementary material available at 10.1186/s13195-023-01240-7.

Probleemgedrag bij mensen met dementie) -20 EHRs from the Alzheimer Center Amsterdam and 10 EHRs from the Alzheimer Center Erasmus MC that were not part of the training and test set -Consensus among authors The original annotation guide was developed to annotate Dutch text and was translated into English for publication in Alzheimer's Research & Therapy. Please note that NPS terminologies may differ for the Dutch and English language, and that subtleties of the Dutch language may have been lost in the translation.

Definition
Delusions are beliefs or assumptions that are false and cannot be corrected.
Terminologies and examples 1. Suspicion He/she is suspicious Suspicious that caregiver is leaving patient Does not trust partner/child/informal carer Convinced/thinks/feeling/idea that partner, child and/or other caregiver is unfaithful or a cheater Convinced/thinking/feeling/the idea of being cheated Angry at partner/child/caregiver because of infidelity The idea that others/strangers steal/hide stuff Believing/thinking/feeling/the idea that the place one lives in is not his/her home 2. Conspiracy allegations Believing/thinking/feeling/the idea of being haunted, poisoned, infected Convinced/thinking/feeling/feeling that others are out to get him/her Believing/thinking/feeling/feeling that someone is trying to harm him/her Believing/thinking/feeling/feeling that others want to harm him/her Believing/thinking/feeling/feeling that others are publicly laughing at him/her Believing/thinking/feeling/feeling that others are criticizing him/her Believing/thinking/feeling/feeling that you are under someone else's control Believing/thinking/feeling/the idea that something happened that has a special meaning to him/her Talks about Mafia/FBI/UFO Unusual/strange/bizarre/weird thoughts (contents) 3. Types of delusions Delusions of grandeur, delusions of persecution, paranoid delusions, delusions of reference, delusions of guilt, delusions of sin, delusions of grandeur, delusions of intoxication, somatic delusions Is paranoid Preoccupation with body or mental functioning 2. Suicidality Suicidal thoughts/plans, think life is not worth living, death wishes, attempted suicide, thoughts about death, suicidal thoughts, internally dissatisfied with my life, dislikes living, convinced that life is no longer worth living, preoccupation with death or suicide, longs for death, would rather be dead, wants to take one's own life 3. Sadness/gloom/depression Sad, gloomy, depressed mood, sad, often feel down and down, don't feel happy, dejected look, depressed, depressed mood 4. Low self-esteem Low self-esteem, self-blame, despises self, loses self-confidence, feels like a failure, thinks others see him as a failure, feels inadequate, worth nothing, feels worthless, helplessness and/or misplaced guilt, discouraged 5. Negativity Recalls bad events/failures/setbacks, pessimistic, sees events from a negative side, worrying about the future, sees the future less bright, no hope for the future, expects the worst for the future, can imagine hardly imagining better times ahead, thoughts of hopelessness, thinks most people are better off than me, often feel hopeless, helpless, worrying, moody, grinding 6. Feeling of emptiness/no feeling Feeling that his/her life is empty, loss of feeling/feeling nothing anymore 7. Emotional In tears, tearful, lamenting, sad 9. Social isolation Social isolation, stopped from many activities and interests, , often bored 10. Delusions consistent with gloom Preoccupation with depressing subjects: punishment, guilt, death, failure, poverty, nihilistic.

Anxiety
Definition Emotional response to a perceived or perceived threat that usually leads to avoidance. Often accompanied by physical reactions (tension, trembling, restlessness, shortness of breath) and feelings of nervousness, nervousness, worry or panic.

Terminologies and examples
1. Worry Worries about physical health, memory, finances, family problems, physical health of relatives, little things, fear of dementia diagnosis, forgetting, the future are annotated, despite the fact that this is sometimes appropriate to the situation.

Afraid/Anxiety
Afraid of dementia diagnosis, afraid to fall, don't dare to go out alone, afraid of getting lost, fear of upcoming events, fear of the future, fear of being away from home, fear for health, fear of memory Generalized anxiety Fear of being alone/being left alone He/she finds it scary to… Anxious, fear, afraid 3. Panic/uncertainty Trembling Panic attack Nervous, nervousness Hunted, tense, tension Concerned, Looks worried 4. Phobias A fear of a certain object or situation and avoiding this object/situation or enduring it with intense fear such as small places of certain animals.